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Families and Carers Supporting Children and Young People

In January the Support Collective held their regular online meet up. Here are some useful resources shared during the discussion.

We welcomed two new members and began by looking at our Shared Ways of Working and principles for coming together online providing a safe place for individuals, families and carers to share their experiences and offer mutual support. We revisit this from time-to-time when new members join.


Managing Personal Assistants/Support Workers

A member shared that they managed a team of nine Personal Assistants to support their daughter to access a weekly timetable planned around her interests. This has at times been difficult to manage with staff sickness and self-isolating required during the pandemic. They explained that their daughter had previously had an Education and Health Care Plan (EHCP), but this had ceased when she left education, resulting in a lot of work and struggle to create a person-centred programme for her. They were not made aware that the EHCP is for young people up to the age of 25. They shared how Adult Social Care were reluctant to fund parts of the programme out of county despite the lack of local provision.

The family member explained that they had recruited her team via word of mouth, at clubs, education settings and Facebook groups; they held onto the details of those they did not interview at the time for the future. They shared that they had been aware of payroll issues when managed by a third party, so decided to manage this also, to ensure the team were supported and paid on time. We shared that Independent Lives offers training for Personal Assistants/Support Workers.



The theme of sleep was explored and one parent shared how their daughter was struggling to sleep and had ceased taking Melatonin as she felt that ‘sleep was a waste of time’ when she could be working on her novel or drawing. This meant that she was having problems getting up for school and had also dropped some leisure activities. Another member shared how their daughter’s sleep had improved considerably with yoga sessions. The Sleep Charity, Sleep Scotland, and the National Autistic Society offer resources that may help, as well as Child and Adolescent Mental Health Services (CAHMS).



One member shared that her daughter’s school had excluded her from school trips and holidays, in one instance refunding the payment without explanation, and on another occasion stating that she was too high a risk to take, yet her church group took her on the same trip and she had a wonderful experience. It was raised that schools had an obligation to adhere to the Equality Act 2010 and there is specific advice for schools available. We discussed that this exclusion inevitably impacts confidence and increases anxiety for individuals.

The parent shared how they had found it ‘strange’ that their daughter had not been invited to her Education and Health Care Plan (EHCP) meeting despite being 15 years of age and at a point of transition to college. They shared how the targets set for their daughter had not been met and that she was deemed to be falling behind. We discussed how school did not appear to adequately meet her needs and that there was exciting potential for the future if she can be involved in the planning, however such decisions come with their own anxiety. Some resources were shared including: Creative courses at DV8 Sussex, mentoring with Arts Emergency, training at the Ferring Country Centre.


Support Collective online meet-ups, Monday 28 February, 11am – 12pm: Adult age individuals with complex support needs, their families and carers. 

Please email [email protected] for the zoom link.

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